Dystonia in Movement Disorders – Webinar Notes

Dystonia in Movement Disorders – Webinar Notes

On February 3rd, the Parkinson and Movement Disorder Alliance hosted Anwar Ahmed, MD, a movement disorder specialist. Dystonia is not a diagnosis, rather a symptom of abnormal and involuntary sustained muscle contractions or pulling, and posture movements. 

He spoke about the different kinds of dystonia, as well as possible treatments such as deep brain stimulation (DBS) or Botox. Additionally he focused on the kind of dystonia impacting Parkinson’s patients and which medication may or may not be helpful. 

The speaker notes that movement disorder specialists are well-placed to treat dystonia.  If you are in Northern California and need to find a movement disorder specialist, please complete the Stanford Parkinson’s Community Outreach “Contact Form”.

(If you live outside of Northern California, contact the American Parkinson Disease Association.)

The webinar recording will be posted soon to the Parkinson and Movement Disorder (PMD) Alliance YouTube channel.

For notes on the February 3rd webinar, please see below. 


– Joelle

“Dystonia in Movement Disorders”

Speaker: Anwar Ahmed, MD, movement disorder specialist

Webinar Host:  Parkinson & Movement Disorder Alliance  

Webinar Date: February 3, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Dystonia vs. Dyskinesia:

Dystonia: abnormal muscle contraction/pulling/posture movements, slower movement, sustained

Dyskinesia: abnormal movements such as head bobbing, they are faster movements, movements come and go more faster

Dystonia: symptom of neurological conditions, is not a diagnosis – it is a symptom or a movement

Dyskinesia: side effect of levodopa, it is a levodopa or other drug-induced side effect

Types of dystonia:

  • Primary Dystonia: dystonia is the only sign (no other clinical features in these patients). Posture could be abnormal but brain MRI/Scans or other tests are all normal, no other neurological findings other than posture is abnormal
  • Secondary Dystonia: dystonia due to structural lesions (such as after a stroke patients develop abnormal posture), or other signs such as Parkinson’s signs alongside

Classifications based on what body part is involved:

  • Generalized Dystonia: whole body has abnormal posture.  This happens in young children, starts in the foot and works its way up.  In children, it can be genetic.
  • Focal dystonia: only involved in one portion of the body such as the neck
  • Multi-focal dystonia: dystonia in multiple locations, such as legs and neck
  • Segmental dystonia: two areas are next to each other (shoulder and neck) are affected 
  • Hemi-dystonia: one side of the body, usually due to structural lesions

In 2013 it was re-classified: 

  • Isolated: Dystonia is the only sign
  • Combined: Dystonia is present with other signs

Similar to the old-fashion way (primary / secondary), but this model is more simplified.

What type of dystonia do Parkinson’s patients have?

  • Many Parkinson’s patients have idiopathic Parkinson’s Disease, which means that the cause is unknown.  It is the most common type of Parkinson’s.
    • In idiopathic Parkinson’s Disease, dystonia in the beginning is not commonly seen, usually happens later in the disease with levodopa treatment. 
    • Some exceptions: In older patients, foot dystonia could be one of the early symptoms of Parkinson’s, or in Young Onset Parkinson’s Disease, sometimes dystonia is more common (hand or neck)
    • In common Parkinson’s, patients usually respond to medications very well
  • Atypical Parkinson’s have dystonia early (within a year). If someone comes with severe dystonic features early, they likely have Atypical Parkinson’s.
    • Dystonia in atypical Parkinson’s is usually resistant to medications
    • Progressive Supranuclear Palsy (PSP) – could be in the neck (hyperextension in the neck), or of the fingers and the hands, and eyelid muscle spasms
    • Multiple System Atrophy (MSA): could be in the neck anterocollis (opposite of hyperextension) where the neck starts drooping
    • Corticobasal Degeneration (CBD): dystonia is only involved in one side of the body, and then moves on to other side

There are other non-Parkinson’s diseases that can cause dystonia but doing a DaTscan, a brain imaging scan that looks at the level of dopamine receptor cells, can help. This test can confirm if the dystonia is due to Parkinson’s or if it is dopamine-responsive dystonia. Dopamine-responsive dystonia refers to dystonia disorders that are due to a body’s response to the levodopa medication, and are different to Parkinson’s and will not develop Parkinson’s disease. 

Regular Parkinson’s disease (not atypical Parkinson’s) dystonia types continued:

  • In the beginning of the disease, dystonia is uncommon
  • In some patients it can be seen in the hand, with problems with handwriting being a first possible symptom of Parkinson’s disease for some patients, or problems with feet walking. 
  • Early-morning dystonia could be where patients have painful toe-curling in the morning. This is because the level of medication in the body dips between doses, or in the morning when there is no medication in the system. 
    • This is also known as a dystonic dyskinesias, not normal dyskinesia because the movements are more sustained and painful, but they are attributed to medication and are treatment-induced
    • Medication can work for many hours, but as disease progressive the amount of time that the medication is effective before a second dose is needed gets shorter
    • There is the possibility of dystonia happening when the drug is in an off-phase (increasing dose and shortening the intervals can help improve dystonia), but it can also happen at the peak dose time (reducing drug can help improve dystonia)

Dystonia by definition, needs to be abnormal posture, not just pain or muscle spasms.

Note: Parkinson’s patients have muscle stiffness due to reduced muscle tone, which causes rigidity, and is not a dystonic muscle spasm. 

Possible treatments for dystonia:

  • Botox injections in the muscles that are causing the leaning or movement, because it relaxes the muscles 
    • It blocks the neurotransmitter at neuromuscular junction to relax the muscle
    • Takes 7 days before it kicks in
    • If it is done in the right place and targets the right muscles, it will last up to 3 months
    • Can be used in the foot, hand, arm etc.
    • Nowadays: 3 main companies make Botox toxin A, and 1 company makes Botox B, all have created a purified toxin so that there is no resistance or where people are immune. In comparison, in the 1990s, there were people who were immune but with manufacturing improvements the risk of being immune to Botox has gone away
    • It can be used lifelong (no limit), but if dystonia gets better it may not be needed anymore thanks to surgical interventions
    • It is a safe treatment
  • Physical therapy helps but only helps if you continue it
  • Surgery putting rods alongside the spine to keep the posture straight.  The surgery is aggressive and unsafe in older patients.
  • Deep Brain Stimulation (DBS) surgeries of the subthalamic nucleus can help as well with posture to some degree.  If dystonia is not fixed (so bad it is irreversible), DBS can help.
  • Drugs such as benztropines that block acetylcholine might be helpful.
  • Muscle relaxants also help
  • Natural Remedies:
    • Cannabidiol (CBD): can help relax muscles, but will not help with posture.  No clinical trials though to prove this
    • Acupuncture can help posture as well

Note: Over time, posture can get fixed and difficult or possibly impossible to reverse as muscles get tighter and tighter. Intervening early with physical therapy, exercise, stretching, and treatment can help prevent it from getting severe.

Pain in dystonia:

  • Uncommon but can occur if muscles are strained by putting too much pressure on them
  • Due to it being uncommon, other conditions such as disc problems or arthritis could be the cause and should be checked and treated
  • Suprascapular nerve blocks can help with the pain

Interesting: Dystonia in Parkinson’s can get worse with activity such as walking, so using toe guards or other guards in the shoe can help with toe curling or hyperextension.

How to figure out the right treatment:

  1. Need to figure out when dystonia happens (off vs. peak dose)
  2. Does it happen on-and-off or all the time
  3. After collecting the above information, determine if it is medication-induced
  4. Then, you can make a treatment plan because you’ve identified the specific type of dystonia

It is important to diagnose the correct kind of dystonia because some drugs that may help one kind of dystonia will worsen another kind. 


Question & Answer:

Question: What is the difference between dystonia in the foot and hammertoe?

Answer: Hammertoe is fixed, and the joint is swollen and enlarged. Dystonia is hyperextension and curling and has more early morning symptoms and medication can help.

Question: Are freezing of gait and dystonia the same?

Answer: No. Freezing of gait is a different mechanism, it is that your brain is freezing your legs onto the ground and you can’t lift your feet. 

Question: Can dystonia cause spinal fusion of the neck surgery to fail?

Answer: Yes. The muscles can cause surgical complications and more pain. Before someone considers the surgery, their muscles need to be relaxed, whether with Botox or other methods. 

Question: Any food that can help or worsen dystonia?

Answer: Not that I know, I don’t think so. 

Question: Which medical professionals are experts in dystonia and where do you find one?

Answer: Movement disorder experts should be well-versed in dystonia. If you can find a fellowship-trained movement disorder specialist in your area (can be researched online), then you are in the right place. There are also academic centers that do dystonia research (such as at Emory in Atlanta, Georgia).  

Question: Is stretching and strengthening ok in an area that received a Botox injection?

Answer: Yes, it is helpful. We recommend that after 14-21 days they start stretching exercises.

Question: Do you recommend valium even though it is addictive?

Answer: It is effective in young children. It is not as effective in Parkinson’s and older patients. For older patients I would suggest other treatments (Physical therapy, botox, DBS) than medication.

Question: Can seizure medication help?

Answer: We have used it but they have minimum effect on older dystonia patients, and are not effective in Parkinson’s patients. 

Any final thoughts:

  • Dystonia is not a diagnosis, is a sign present in different conditions
  • Parkinson’s have different types of dystonia in addition to other symptoms such as tremors or rigidity
  • Needs to be treated with medication adjustments
  • Needs to be identified early on so it does not develop into a fixed posture 
  •  Dystonia responds well to Botox therapy (more effective in non-Parkinson’s patients than people with Parkinson’s, but is still helpful for people with Parkinson’s)
  • A combination of Botox and other medications or therapies can be helpful
  • Tracking symptoms in a journal is helpful